New PET Scan

June 28, 2018

Today is PET Scan Day. It took an act of Congress to get this scan scheduled. Ideally, this would have been done before I started radiation. Unfortunately, the schedule for the machine/technicians was loaded through today. I’m a little nervous to find out my remaining nodes’ status. I want them to be clear.

I’ve been without caffeine since last week. I have been without sugar/carbohydrates in any form since Sunday. Getting back off the caffeine wasn’t as bad as it was last fall. I was extra tired for a couple of days, but no headaches or other withdrawal symptoms other than it’s contributing to my generally crabby mood. Sugar’s something I haven’t had that much of since starting chemo because almost all sweet goodies taste either nasty or so sweet that they’re sickening. The sweet stuff I’ve had more of lately is in the form of fruit and a couple of other snacks that don’t make me gag. The test also requires me to stop eating carbs like pasta and any veggies that aren’t green. Naturally, as soon as I stopped eating anything containing sugar or carbs for this test, that’s all I wanted. I was dreaming about noodles. LOL

One of the encouraging things to me is that there are cancer survivors with stories everywhere you go. Ladies in my neighborhood, or at the mall, the grocery store, Target, or Kohl’s. All survivors or related to breast cancer survivors. All of them tell me that all this agony is worth it. I believe them. The lady I sat next to in the Radiology waiting room was a cancer survivor waiting for her friend. I didn’t realize that she, too, was a survivor until they were about to leave. She asked where I lived, and when I told her, she said she has a yoga studio not far from where I live. She asked for a hug. I obliged. She held onto me tightly and started taking slow, deep breaths. She knows what it’s like sitting in this room waiting. She was helping to calm me down for my scan. I am grateful to her and those 3 slow deep breaths that helped re-center me this morning.

Apparently, no one had prepped the radiology tech to deal with my port. She had to call the IV Therapy team to come down and access the port. In all honesty, she’d have needed them to put in a regular IV, too. I have no veins. To make things more interesting, my port isn’t delivering blood return today. The first phlebotomist stuck the needle in the port twice. It hurt both times despite the lidocaine. She had to call for a backup person, who also stuck it twice. They could get saline in, but no blood back. So they left it in, put the radioactive agent in through the port, and blessed me ready for the scan.

One of the things I like about the PET is that someone went out of their way to poke holes in the ceiling tiles and put white Christmas lights that twinkle in the holes. It’s like having a little bit of night sky while you’re in the machine. They’ve also got music and an interesting slide show of pictures that you can watch for a while during the scan. It’s a little relaxing while being distracting. The technicians that run these machines are really nice, too. I had asked to see the scan when we were done. They were nice enough to accommodate me. I was happy to see that the 2 nodes that I’d prayed would be gone weren’t there. What I didn’t pray for was a clear scan, and I, of course, didn’t get one. There’s still a node in my armpit. I didn’t expect this, but it’s not the end of the world.

Because my port wasn’t playing nicely, the Radiology folks decided they needed to walk me down to the OIC to have someone figure out what to do about the port and de-access it before I could leave. The nurse down there also put the needle in twice to make sure she had it in correctly and also couldn’t get blood return. She talked to a couple of colleagues and then ordered a clearing agent. She injected that into the port, removed the needle and sent me on my way.

After 40 minutes to get the port addressed, I was now not in any way shape or form going to make it to my radiation appointment anywhere near on time. Traffic on a Thursday in Seattle sucks to start with, then add that it’s 3:00 in the afternoon and there’s just an acceptance that you’re not going anywhere on time much less in a hurry. The line to get to I-5 from the hospital was not moving. When I finally got down to the bridge over I-5, there were a bunch of squad cars and a fire truck in the middle of the street across from the on-ramp. Ah. Rubberneckers. Once I got on the interstate, there was just a lot of traffic and it was hard to move through the wolf packs. I ended up getting boxed in by a bunch of delivery trucks all the way to the exit for the airport. I got a call from the radiation technicians asking if I was still intending to make my appointment. I reminded them that I’d just been at the hospital downtown and would be there as I could manage with traffic. Once I got on to the highway that goes to the other hospital for radiation, there was another big backup due to an accident on that road, and the exit was backed up for half a mile. I had just gotten to the top of the exit, which was backed up from the signal a couple of blocks ahead. I finally got on the radiation table at 4:00 pm.

Today was also an appointment with the doctor after the treatment. When we got into the exam room and sat down, she asked something like how I was. I had to be honest and tell her that I was extra crabby because I hadn’t had anything to eat all day because of the scan and racing to get there. After offering me something out of the vending machine, she started talking through the results of the PET that I’d just left. I was surprised to find that she’d have any results so fast. Like I’d seen, there is still an axillary node (in my armpit) that the RO thinks is possibly an inflammatory node due to the surgery. It’s already in the field of radiation, so just in case it’s not, she’ll be adding an extra plan for a boost to that area. There’s also a new spot that we need to get some additional opinions about before figuring out how to proceed. This one looks like it’s near where my trachea splits between my lungs. So the RO will take my case to tomorrow’s Tumor Board meeting and get some input from Radiology and the Pulmonary team. If they think it’s something to look at, there will be a bronchoscope with a possible biopsy. If it’s positive, she’ll have to re-work the treatment plans because this area is not at all within the current radiation fields.

I’m not feeling freaked out by this yet.  I’m on maintenance chemo. It should respond if it’s not already. The other spot may or may not be something to worry about. There was a also a weird artifact that appeared to be on my skin that didn’t make sense. We’ll know more next week.

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7 Weeks Post-Op / 11 Weeks Post-Chemo

June 29, 2018

Today I’m 7 weeks post-op and 11 weeks finished with chemo. It’s been a long and rough week. I’m tired. Mentally and physically. The first couple of radiation appointments this week were stressful. The past couple of weeks have left me feeling frustrated and powerless. I’ve never been a big fan of being told that I can’t do something. I’m getting really tired of hearing that I have to continue to put the rest of my life on hold because cancer’s more important.

Let me say this today, too – if you get a breast cancer, a cancer diagnosis and they give you a recommendation that includes skipping chemo, take it. Don’t let your fear push you into poisoning your body if you don’t have to. New research is showing that they don’t have to give chemo to everyone, and that some folks are requesting it anyway. If I’d had that option, I’d have bypassed chemo. The side effects of this stuff are almost as bad as, or worse than, the disease, and they don’t go away as soon as you’re done getting it. For some side effects, it will take months, or even years to go away, if they go away at all. So, if you’re given a choice, stay chemo free as long as you can.

Actually, don’t let fear dictate any decision you make about your treatment. Educate yourself as much as you can on your options and discuss them thoroughly with your care team. If you don’t have a good relationship with your doctors, find someone with whom you can trust to help you make the best decisions for yourself. It may not always feel like it, but you do have choices.

Post-surgery-wise, I’m doing great. I have pretty decent range of motion this week – I’ve been working on this pretty hard. My incisions look pretty good. There is still some bruising apparent on my skin on both sides from all the work she had to do. There’s also still a lump on my right side where she moved and re-attached tissue to give that breast continuity where the tumor was removed. Those are all normal things, and I’m good with them.

At the Radiation Oncologist’s suggestion, and for the love of my bank account, I went back to work last week. I cannot imagine how people who aren’t offered short-term disability or other paid leave do this. I have great benefits and this is still a rough road.

The neuropathy is still there. Still better some days than others. I needed new shoes and found that Mizunos feel better than the Saucony’s did. I’m hoping to be able to get out and about more.

In the past week or so, I’ve noticed that my nail beds are turning purple again, I’ve started having joint pain after I’ve been sitting a bit, and my vision seems to be changing, which may be more that I’m 53, my eyes are changing anyway, and they don’t tolerate going back and forth between glasses and contacts as much as they used to. Although, I do have to say that my eyes are drier since starting chemo than they used to be. I’m also finding those pimples on and around my eyelids again as well as the sores I’ve had for months in my nose. I thought these weren’t side effects of Herceptin. I raised them to the Oncologist. She’s thinking they are late effects of the Taxol. So… lesson for the day: it’s going to take a very l-o-o-o-o-o-o-n-g time for chemo to leave my body and for my body to recover from being attacked by this poison.

Something I noticed a few weeks back and thought it was just because my body hair was growing back from zero, was that the hair itself is pretty fragile. When I look at my new unibrow and try to pluck some of the stray hairs there, they’re really, really fine and just come right out. I thought they’d get stronger, but they’re not. Maybe the next round they will be tougher.

The hair on my head appears to be filling in a bit more. It’s still about 1/2″ – 3/4″ long and pretty gray. It still feels pretty fine, so that part so far hasn’t changed much. I’m hoping it starts growing faster soon. I want to make it purple so bad…

My appetite is still not great. I’m still finding it hard to eat a lot of foods I used to. Some because my teeth are still sensitive, the rest because they just don’t taste good anymore. I guess the wonky taste in my mouth will be with me until I’m all done with the maintenance chemo. Maybe by then I’ll have completely given up on a lot of the things that taste gross now.

The chemobrain felt worse this week. Stress seems to affect it some, and it’s been a stressful couple of weeks. I’m still struggling a lot with reading. I can manage articles online, but I keep having to stop and go back and re-read sections in a book. Learning new stuff still makes my brain feel like pudding and so tired that I need a nap. I have noticed lately that I am not losing as many words, and that when I do, I’m getting them back a little sooner. While I was still on AC chemo, they wouldn’t come back at all. So thankful they are now.

 

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1st Radiation Treatment

June 25, 2018

Today was it. The first day of radiation. The first day of a major hurdle in my treatment.

I spent some time Saturday catching up with a friend from elementary and high school down at Pike Market before they had to go back to Minnesota. It turned out to be a nice day down there, and they taught me a trick for getting between the Market and the Waterfront that I didn’t know before, so that was cool. Afterward, I went on a mission to see if I could find soap that doesn’t have anything in it that will interfere with radiation. I found some Free & Clear shampoo at Target. They also carry it at Walgreen’s. I finally found some Cetaphil body wash that was unscented and didn’t contain any alcohol, oils or perfumes. It’s a little more expensive than regular body wash, but I only need it for about 8 weeks, so a couple bucks extra won’t kill me.

The gowns at the Partner Hospital where I’m getting radiation are awful. I mentioned this to the radiation techs last week and got a sympathetic murmur from each of them. Sure, you’re not flashing the world every time you walk down the hall.

The tech came and took me back to the treatment room and got me situated on the table. They pull up the plans on two big screens about 10 feet away that I can’t really see or read. I can hear the machine working to deliver the radiation beams to my body. When the plans were finished running, the tech came back and drew with a Sharpie on my chest again. The markings are so the doctors know where the field is on my body, and so that I know where to put the after-care creams/lotions.

There was one lady in the waiting room when I got there who was waiting for someone else. She wasn’t there long after I got changed and had made a couple of treks out to talk to the nurse. When I got done, there were two other ladies getting changed and ready for their treatments. One lady I talked to had uterine cancer, and part of her treatment required her to have a full bladder. I can’t imagine having to lie on that table for 20 minutes with a full bladder. That would be excruciating. She also told me that she’s fighting with lymphedema. They took 21 lymph nodes from her pelvis and so the lymphedema shows up sometimes in one leg and sometimes in both. Another reminder that there’s always someone who’s got bigger problems than you. Always.

I didn’t really feel any different until a few hours after getting home when I started feeling like my skin was burning a bit. I put some burn cream on it for now. It seems to have calmed down. I don’t know if that was a residual feeling from surgery, if it’s actually that my skin is already burning or it’s psychosomatic. In any event, I’m putting burn cream on it anyway to stay ahead of the curve. Thankfully, this stuff doesn’t smell bad.

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If I Hate Pink So Much Why the Title?

Way before I had breast cancer, and way before pink ribbon campaigns, I hated pink. I hate what pink is meant to stand for, which was girly-ness. Girls (and women) are supposed to be dainty, ladylike, obedient, cooperative and most importantly, less than. The color is overwhelmingly associated with delicacy and femininity. Then there’s that whole association with lady parts and I’m just done.

I’ve never been, and never will be, a girly girl. No pink. No frilly dresses. Or dresses period, really. No ladylike baloney. It Just ain’t happenin’. I’ve never liked dresses. I don’t like my legs bare. It’s been that way since I was little.

When the Pink Ribbon campaigns started in the early 90s, I rolled my eyes. Hard. Every cause under the sun suddenly needed a ribbon campaign. Yellow ribbons for serving soldiers, red ones for AIDS, green for mental health awareness. Then… every flavor of cancer got its own ribbon. Pink ribbons for breast cancer. Because y’know, it’s a women’s disease, and breasts are kinda pink, and… the clincher… pink is associated with the female gender and all of that crappy stereotyping that goes with it. Yuck.

Getting cancer is anything but good, cooperative, or beautiful. It’s an ugly fucking disease. It doesn’t matter which kind you get. It’s all damned scary.

So why, if this is how I feel about pink and pink ribbons, did I chose Pink Ribbon Road for my title? Well… I wanted to be easy to find. This pink ribbon nonsense has been going on for over 25 years and it’s a known visible cue. I didn’t want my breast cancer notes to be lost among those for some other disease or cause. The way to do that was to co-opt the concept so that my site would be added to Google and other search engines and grouped with other sites like it. Why? Because I didn’t know diddly-squat about cancer or breast cancer or any of what goes along with it before I got this dreaded disease. I want people to find my words and have some idea what to expect when they’re diagnosed, and to know that they don’t have to take a back seat to all that encompasses the treatment of this condition. I’m hoping that somehow word gets out to people who also have no genetic pre-disposition, or other obvious reason, to be vigilant about their health and getting their annual screenings. Would mine have been found sooner if I’d have been getting regular mammograms? It’s hard to say. The type of breast cancer I have is pretty aggressive and wily. It could have grown over the course of a year or two, or it might have taken only 6 months. I have no way of knowing. All I know is that I’ve got it and am being treated in the hope of sending it into remission. Probably kind of a pipe dream, but it’s one I’ll hold onto for a while longer.

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Radiation Dry Run

June 22, 2018

I had the radiation dry run this morning. One of the things that came out of the conversation with the nurse before I went in is how forthright the Radiation Oncologist (RO) is with her patients. I really appreciate that she will tell me like it is. I’m not a fan of the dancing around I am feeling like I’ve gotten from the other two docs lately.

Because my RO has been very honest and direct about what she’s seeing and what she can do with the disease that’s left, I felt really overwhelmed by the whole thing for the 2nd, or maybe 3rd, time since I started this journey. I’ve been holding onto a lot of anxiety over the radiation in the first place. It all became too much within the space of 5 minutes.

Unlike chemo, they don’t do radiation treatments on holidays. I was a little surprised. I asked about what happens if I need to get away and wouldn’t be in town. Of course, they don’t want me to take any days off on my own. I’m not really thinking too hard about doing that, but I want the option to have a life in the middle of all this. So, officially, any missed days are tacked on at the end, just like chemo.

When the Radiation Techs (RTs) were ready for me, I got into a gown and they took me to the room where the treatment would be done. This table was more uncomfortable to lie on than the one I was on last week for the CT scans. This wasn’t a good thing because I had to be there and lying still for about an hour. I could feel my neck and shoulder blade griping not long after I got on the table. I did my best to relax my left arm – it kept twitching and the pinch in my shoulder blade just kept getting worse. I asked several times about how much longer it would be or if I could have a break and no one answered despite being told that they could see and hear me the whole time. That didn’t make me too awfully happy. They came in to adjust the machine a couple of times and I let them know then that I couldn’t keep my left arm above my head for much longer. I was nearly at a point of tears by the time we were finished. I’ve already made a note to get to the chiropractor next week the night before the PET scan.

It gets cold lying on the table, and I have zero ability to judge time after getting in the room. I couldn’t see a clock and couldn’t read the computer screens with the radiation plans on them, either. They had me do some deep breaths, which are done to inflate my lungs and move my heart out of the field of radiation, and took a bunch of x-rays to verify their planning. After a little while, one of the techs came in and made some markings on my chest. They had me do more cycles of deep and regular breaths before coming back in to add more markings. At the end, I got a 5th tattoo. This one is on the top of my breast. I don’t know what these markings are for. They sure look weird.

After I was done, she handed me some alcohol wipes to get the Sharpie marker off. I at first thought I’d wait to get home. Then I saw that it was visible out the top of my shirt, so I took enough of it off so that no one would see it just looking at me. They also gave me my 6 week radiation schedule. I’ll have to have them make a few changes to accommodate the maintenance chemo appointments. If I had more than 4 conflicts, this would be a real pain in the ass. The place that I’m getting the radiation treatments isn’t The Hospital. It’s an affiliated partner facility. They’re not on the same scheduling system as downtown.

I am hoping that the time passes quickly for this treatment. My last treatment will be Monday, August 6th. My 35th class reunion falls during the last week of treatment. I’m going to have to skip it this year. It will be the first one I’ve missed and I feel a little sad. I don’t know what to expect, and I don’t know how I’m going to feel. On top of that, I wouldn’t be able to spend as much time as I’d like catching up with family and other friends while in town because I can’t take more than 1 day out of treatment to live my life.

This is the part of cancer that really sucks. So much of life gets lost during the year of treatments. I’ve been doing this for 7 months already. It’s wearing thin. Either there isn’t a way to fit things in, or the side effects keep us from attending or enjoying life events with family and friends. Quality of Life issues need to be addressed by the oncological community.

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6 Weeks Post-Op / 10 Weeks Post Chemo

June 22, 2018

Another busy week.

The Radiation Oncologist (RO) last week suggested that I go back to work for a while because radiation fatigue wouldn’t be noticeable for about a month. So… I did. I’m not mentally ready to go back to work. Any illusions anyone has that post-surgery recovery time is spent relaxing need to be exorcised. I’ve had more medical appointments in the past 6 weeks than I’ve had in the last 6 years.  I’m not joking. There was something almost every day and usually multiple things going on on one day.  Having to go to radiation every day for 6 weeks is enough of a mind fuck. Adding all these other appointments to that is getting overwhelming.

Fortunately, I had the weekend to get out and away and not think too hard about any of the upcoming radiation treatments. I took my sister and her friend out to see Seattle. We went to Pike Market, over to the Peninsula and up to Mt. Rainier. I haven’t really been able to get out and do much road tripping like I used to since probably last May or June. I know that by August, I was so anemic I couldn’t drive an hour and a half without stopping for a nap. So getting out this past weekend was a little bit of a test of my stamina. I was happy with the results.

After a full weekend of touristing, I had a crown replacement scheduled on Monday afternoon. It was scheduled for 2-hours but became a 3-1/2 hour adventure. It took the dentist a full 2 hours just to drill the old crown off. Apparently it was made of zirconium, which is a really hard material. After that, she cleaned up the cavity that was starting to form and got the tooth ready for a new temporary crown. When I left her office, I looked like I had a stroke. My sister amusingly gave me the test for stroke on our way to dinner. I’m not sure I passed.

I took my sister and her friend back to the airport Tuesday morning and went back home to work. I was able to stop by the office on Wednesday to let some folks know I was coming back for about a month, and that if I felt good at the end of July, I’d skip the leave. On Thursday I was able to rebuild a part of my home computer lab – something I’d been trying to do for a while and hadn’t been successful. I think it was just because I had the time to dedicate to it this time that it worked.

Friday was the Radiation Dry Run. I brought a bunch of questions with me to the appointment. I’d been trying to find unscented soap with no alcohol or oils in it and had been so far unsuccessful. When I told her I’d found that unscented Ivory and Aveeno both still had perfume and botanical oils in them, she was surprised. The search goes on.

When I was there for the planning sessions last week, they told me that I need to stop taking anti-oxidants during the treatment. So I brought my current vitamins with me and we sorted out which ones I could still take and which I needed to put on hold. Next week I need to ask about diet – lots of fruits and veggies are high in antioxidants and if I can’t take supplements, I need to know how much I need to alter my current diet.

Next week is the PET scan. I have to go full protein diet for that. I’m really not a fan of diets where I can’t eat normal food. I end up craving all the stuff I can’t eat. It sucks.

We also talked about the various things I can put on my skin after treatment – like Aquaphor, clear aloe vera and calendula cream. She let me in on a secret – there is a cream that really works, but it’s a little expensive – it’s called My Girls cream. I may have to give that a try.  I have Aquaphor and use it for a lot of things. I haven’t been able to find aloe vera that doesn’t contain alcohol yet. There was a less expensive version of calendula cream at Rite Aid that I might try.

I’m also now down about 12 pounds from last month. My jeans are starting to feel baggy again. I wasn’t too worried about it until I saw something about the radiation plan being set up for my current weight and body type. Crap. I’m getting really tired of things I see as being good being turned negative.  So next week I’ll be asking for a nutritionist again.

In the post-chemo realm, there wasn’t much change from last week other than dropping another 2-ish pounds in the last week. The neuropathy is still there. I still get tired faster than I used to, but it’s getting better. My chemo brain is still there, and about the same this week.

What did change this week was in the realm of treatment plans. I put together an email for all 3 of my doctors last week regarding the Level 3 node under my pec. After consulting more with the medical oncologist, I decided to add the Perjeta back to my maintenance chemo. I don’t know if or how much it will help with the cells running around my body, but I want to do all I can now to stop this disease because I don’t want to go through all of this ever again.

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5 Weeks Post-Op / 9 Weeks Post-Chemo

June 15, 2018

What a week!

My sister and her friend flew in on Tuesday, I had 2 sessions of radiation planning, a dental cleaning appointment and an Occupational Therapy (OT) appointment. In between, there were errands to run, shopping to do and plenty of entertaining of my guests.

During the Radiation Planning I learned that I needed to do a better job of moving and stretching my arm before I start radiation. I can’t do a lot, but I can start doing a little more so that I don’t lose range of motion or end up with lymphedema or other late complications.

My incisions are finally all closed up – I had a couple of spots where new skin needed to grow that are now all closed. I’ve got nearly all the feeling back in my left armpit, but the feeling in my left breast is still lagging a bit. I can tell that it’s working on coming back. It’s just not there. My right armpit’s still pretty numb and I have the occasional shooting pain down into my forearm when I reach a certain way. That pain’s slowly going away.  I can still feel the pull in my chest when I reach fully in any direction. That’s been getting slowly better, too.

The neuropathy in my hands and feet comes and goes. It never fully goes away, but some days sure feel a lot better than others. Standing or walking for longer periods still makes my feet hurt quite a bit. Massages help some when I can get them. My teeth are still sensitive to extreme hot and cold and certain foods, which is another form of neuropathy.

My hair’s maybe 3/4″ long now. My eyebrows and eyelashes are both coming back in pretty well. I think I’ll still be wearing a hat to keep my head warm for a bit longer. It helps make sure I don’t get sunburned, too. I’m getting those little pimples around my eyes an on my eyelids, and my nail beds are turning colors again. I’ll mention this to the oncologist next time I’m there. Neither of those are noted side effects of the maintenance chemo.

The metallic taste and mouth feel are still there. I think I’m stuck with this until I’m done with Herceptin in February. Popcorn tastes like I’m eating bits of aluminum foil. Chips make my teeth hurt and are so salty they’re no longer tolerable. Similarly, sweet things are sooo sweet that I just can’t handle more than a taste, if I can manage that. There are just some things I can’t/won’t eat, and some of them I will hopefully not miss after I’m done with all of this. On the flip side, there are some ice creams and cakes that aren’t horribly affected so I’ll still have those later.

Lastly, the chemo brain is still there. There are some things that are coming back to me sooner than they were before, but I’m still forgetting things while I’m in the middle of doing them. Like the neuropathy, some days feel like I’m making progress and some days I can’t remember anything and am mentally exhausted all day. This is hard.

 

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